Large variation in assessment and outcome definitions to describe the burden of long-term morbidity in childhood cancer survivors: A systematic review

Research output: Contribution to journalReview article


We systematically reviewed outcome assessment methods, outcome classification, and severity grading of reported outcomes in studies investigating the burden of physical long-term morbidity in childhood cancer survivors (CCS). A MEDLINE and EMBASE search identified 56 studies reporting on three or more types of health conditions in 5-year CCS, for which information was extracted on outcome types and classification, methods of outcome ascertainment, and severity grading. There was substantial variability in classification and types of health conditions reported and in methods of outcome ascertainment. Only 59% of the included studies applied severity grading, mainly the common terminology criteria of adverse events. This large variation in assessment and definition of the burden of physical long-term morbidity in CCS challenges interpretation, comparison, and pooling data across studies. Global collaboration is needed to standardize assessments and harmonize definitions of long-term physical morbidity and associated outcomes in childhood cancer survivorship research.


  • Nina Streefkerk
  • Lisanne C.E. Fioole
  • Josien G.M. Beijer
  • Elizabeth A.M. Feijen
  • Jop C. Teepen
  • Jeanette F. Winther
  • Cecile M. Ronckers
  • Jaqueline J. Loonen
  • Eline van Dulmen-den Broeder
  • Rod Skinner
  • Melissa M. Hudson
  • Wim J.E. Tissing
  • Joke C. Korevaar
  • Renée L. Mulder
  • Leontine C.M. Kremer
External organisations
  • Academic Medical Center of University of Amsterdam (AMC)
  • Princess Maxima Center for Pediatric Oncology/Hematology
  • Skåne University Hospital
  • Radboud Institute for Health Sciences
  • Chinese University of Hong Kong
  • University of Newcastle upon Tyne
  • St Jude Children´s Research Hospital, Memphis
  • Beatrix Children's Hospital
  • Netherlands Institute for Health Services Research
  • Lund University
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Hematology


  • childhood cancer survivors, long-term morbidity, outcome assessment, outcome definition, severity grading
Original languageEnglish
Article numbere28611
JournalPediatric Blood and Cancer
Issue number11
Publication statusPublished - 2020 Nov 1
Publication categoryResearch